$5M donation will create 'rare and solid tumor' program at Levine

The program will oversee care for all solid tumors, rare tumors, metaiodobenzylguanidine (MIBG) therapy and all related clinical and scientific research.

Author:
Mike Hanson

Published:
4:19 PM EDT April 10, 2018

Updated:
5:26 PM EDT April 10, 2018

CHARLOTTE, N.C. -- On Tuesday, Atrium Health announced a $5 million charitable commitment from the Isabella Santos Foundation to establish a 'rare and solid tumor' program at Levine Children’s Hospital.

The program will oversee care for all solid tumors, rare tumors, metaiodobenzylguanidine (MIBG) therapy and all related clinical and scientific research. The donation, the largest in the hospital’s history, will fund the creation of a comprehensive team of providers and researchers uniquely positioned to advance care and research for rare and solid tumors.

The team will be constructed over a period of five years, with the initial focus on hiring a medical director, who will be the Isabella Santos Foundation Endowed Chair in Rare & Solid Tumors. The program will serve roughly one-third of the 135 new cancer patients Levine sees each year and will allow the hospital to expand their clinical trials.

“This gift is special because not only will it help us establish a program that will transform pediatric cancer care in the region, but it is also a sign of the deep level of trust that the Santos family places in Atrium Health’s Levine Children’s Hospital,” said Gene Woods, President and CEO of Atrium Health. “We don’t take this trust lightly. We commit to honoring the memory of Isabella as we fulfill our mission to improve health, elevate hope, and advance healing for all.”

The $5 million gift comes on the heels of a $1 million donation the foundation made in 2017 to help build a MIBG suite at Levine. The two-room suite, which will include a lead-lined patient room and an adjoining room for parents and caregivers, will provide targeted radiation to pediatric neuroblastoma patients and is slated to open in late 2018.

In 2007, Isabella Santos was diagnosed with neuroblastoma, a rare form of childhood cancer that affects approximately 750 children each year. During her five-year fight, Isabella received much of her care at Levine. However, some of the clinical trials and advanced treatments she needed were only available out of state in New York City and Philadelphia.

"She never really realized she had cancer, it was always about saving her friends. So I think for us whenever we decide to expand our growth or think about other rare cancers...I think that's her pushing me...like, 'Mom let's save these other kids.' That's her kind of pushing us." said Erin Santos, President of the Isabella Santos Foundation. "This is probably the best thing that can come from tragedy."

Erin Santos: “The domino effect is still falling. I can see kids like her and it gives me hope with this gift. We are just normal people doing amazing things.”

With this gift, families will have access to the latest cancer treatments and expertise in Charlotte and the region.

“While I wish Isabella could have received the therapy in Charlotte, it is through her legacy that other families will be able to do so, and we are providing them with access to the most innovative research and treatments in their own backyard,” added Erin.

Javier Oesterheld, MD, the Jeff Gordon Children’s Foundation Endowed Chair in Cancer & Blood Disorders and Specialty Medical Director at Levine Children’s Hospital’s Torrence E. Hemby, Jr. Pediatric Hematology, Oncology and Blood and Marrow Transplant Center, also has a personal stake in the success of the program. He was the doctor who cared for Isabella and has spent his career specializing in neuroblastoma, with a particular emphasis on conducting clinical trials.

"It is amazing to watch Erin. It is impossible to promote pediatric cancer research and treatments solely based on regular funding. Atrium Health relies on community support and philanthropy to further our mission,” Dr. Oesterheld said. “We are deeply humbled and honored for the support of the Isabella Santos Foundation and their commitment to patients in this region. This will allow our program to flourish and to be among the best in the nation.”

As the need for comprehensive cancer care in the region continues to grow, philanthropic support from donors and organizations such as the Isabella Santos Foundation will help ensure patients have access to world-class care, regardless of where they live.

Dr. Oesterheld hopes to have the new medical director in place by the end of 2018 and start new medical trials soon afterward.